Hospice Materials Too Complicated to Help Families

MADISON - Families facing the death of a loved one also face an unnecessary additional obstacle: Many of the written materials hospices give to families to prepare them for the death are too complicated for most families to understand

The result, says Dr. Karen Kehl of the University of Wisconsin-Madison School of Nursing, is that families already under great emotional stress understand neither what is happening nor what to expect.

Kehl, assistant professor of nursing, is a former hospice nurse now dedicated to researching and improving end-of-life care. Her recent analysis of the readability of hospice materials found many are written at too high a reading level for their audiences to understand. The materials further complicate an already difficult and painful experience.

"The real issue is how the families can receive and understand so much information at a particularly difficult time in their lives," Kehl says. "One key piece is whether the written materials are written at a level and in a language that the family can understand. Another piece is whether families are emotionally prepared to accept the information at all."

Research shows that the average adult American reads at an eighth- to ninth-grade reading level, with about one in five at a fifth-grade reading level or below. However, studies have found that health-care education materials are best written for a fifth to sixth-grade reading level because it’s so important that the material be well-understood.

Kehl surveyed 400 hospices nationwide - 40 from each of the 10 Centers for Medicare and Medicaid Services regions were randomly selected. Written materials were received from 170 hospices. A total of 150 different documents were collected for analysis.

"Most hospices give families between two and seven documents," Kehl says. "Think about getting seven different pamphlets while your loved one is dying!"

Kehl and co-researcher Kayla McCarty determined readability scores using four different measures of readability: Simple Measure of Gobbledygook (SMOG), which estimates the years of education needed to understand a written document; the Flesch Reading Ease, which is considered one of the oldest reliable readability formulas; Flesch-Kincaid grade level, a refinement of the Flesch Reading Ease developed for educational materials; and CLEAR Mean Grade, which gives a difficulty score for every word and a mean score for every sentence.

"We were able to start identifying what words and sentences were pushing that grade level above a fifth to sixth-grade reading level," Kehl says. "It was usually medical terminology. It makes sense from a nursing perspective that you would talk about things like catheters and apnea. But when you think about stressed individuals reading this and trying to figure out what it means, we went back and counted when they gave an explanation of those terms, and it was a fairly low occurrence. Explicit and exact explanations were quite rare. Thirty percent of these medical terms weren’t being explained at all."

Kehl says there is no research demonstrating that any written materials make it any easier for families coping with someone dying.

"We need to find out if written materials are even helpful," she says. "We also need to find out what is the best learning style for people? It differs. Some are not good at learning through written materials or through verbal description. A video may be more effective."

Kehl tells a story about a colleague whose brother-in-law was dying and in hospice care.

"My colleague came to me and said, 'This is ridiculous,' and he handed me this pile of information they had given him," she says. "He said, 'You know when something changed, we didn't have time to go through all this and find what we were looking for.' The result is that they largely didn’t use it. One of the reasons they didn’t use it was because they didn’t understand it. If you glance at it and it's not understandable, why would you go on reading?"

Kehl's study won the Hospice and Palliative Nursing Association's Outstanding Research Abstract Award. The project was funded by the UW-Madison Institute of Clinical and Translational Research.